WG & Its effects on my Lungs & what has it done to yours

[wgrebel]

Hi everybody. My name is Tim McGee and this is my first post on the WG website. My wife has posted on here before, she is Kmcgee21. I have had hard time talking to anyone about what has happened I want to ask ya'll (i'm a southerner) about my lungs and I just want to talk to some people who understand.

I was diagnosed with WG 10-23-09. Since that time it seems I have been running a marathon with hurdles. My story starts out just like alot of others I had a sinus infection last August (2009). I went to my doctor and after antibiotics and decadron did not work I went to the ER a week later and that did not help. Labor Day week 2009 I spent a week in the Hospital to get re-hydrated and to cure my "sinus infection". After a week in the hospital I was released and a week later was no better. I was living on decadron and pain pills for headaches when my regular doctor got me into see a buddy of his who was an ENT. The ENT did sinus surgery on me 9-30-09 & I had some relief for two-three days. By the second week of October 2009 I had lost my hearing and my sinuses were no better. October 14, 2009 I was running a 103 degree fever and my wife took me to the ER. The ER X-rayed my lungs and "diagnosed" me with pneumonia. I spent five days in the hospital being treated for pneumonia without improvement.

The Monday after I went into the hospital a new Hospitalist noticed my fingers has spurs under my fingernails and my feet were swelling. She asked me if I would transfer to Memphis & arranged for me and my wife to ride an ambulance to Memphis Baptist Hospital. She informed them she thought it was WG. An army of doctors and students inspected me my first full day at Memphis. I started prednisone 120 mg that day. My ears opened up after being on the prednisone. They did a lung biopsy Thursday 10/22/09 and ANCA test and Friday 10/23/09 we got the the word, it was WG. I could not even pronounce it and I still look at my medic alert bracelet to spell it when I go to the doctor. I took my first dose of Cytoxan that weekend (by IV) and was discharged from the hospital 10/28. About a week after I got home from Memphis my stomach began to hurt. I spent the first few days of November in severe stomach pain and dehydrated. I was also on coumadin. My wife and I were told by my WG doc (at the time) to go to out local ER and get a vitamin K shot. We did on 11/12/09 and I was admitted to the local hospital that night because my vitamin K was out of whack. My stomach pain grew steadily worse in the hospital and after two nights in my local hosptal I was back in Memphis.

My second Memphis stay consisted of every disgestive test imaginable. They finally got things moving again in Memphis and I was discharged 11/23/09. I got a new WG doc in Tupelo after I got out of the hospital. He ran a bone density test, put me on all kinds of meds for my bones, and they told me to relieve my bladder once per hour for four hours after taking Cytoxan to minimize risks. I was not told this in Memphis. The first hurdle I faced was severe foot pain ( the vasculitis had turned three toes on my right foot black and one on my left foot). Bone was exposed on one toe on my right foot and I had one toe on my left foot and another on my right foot amputated. In December the hurdle was my creatine. It was at 2.2 when I left the hospital in November 2009. My last visit in February it was down to 1.7. The prednisone has made me diabetic and when you are on coumadin you have to be very careful (two more hurdles). The hurdle in January was fatigue and foot pain.

The present hurdle is my lungs. I have one small nodule in my lungs and some restricted airways. My new pulmonologist gave me an inhaler but since I got home from the visit I have not been myself. My rheumy told me on 2-17-10 I was "moving" toward remission and I was on cloud nine. However, since I got home from the pulmonologist Its like i'm scared to breathe. Did anyone else go through this with their lungs? How did you overcome the scary, fish out of water feeling? Thanks for letting me rant and remember prayer changes things.
WGREBEL

[Sangye]

Hi Tim,
I'm glad you found the group. I wasn't sure if you actually have a Wegs specialist, or just a rheumy who has treated Wegs on occasion.

I'm horrified that no one told you about cytoxan (ctx) and your bladder. I hope they told you to drink at least 1.5 liters of water a day, too. You have to flush the ctx out with lots of water all day long, and go to the bathroom often so it doesn't sit in your bladder.

Steroid-induced hyperglycemia is not necessarily permanent. When you reduce the pred, it usually goes away and you won't have diabetes. Of course it depends on some other factors, like your pre-Wegs blood sugar levels. Mostly it's a "wait and see" thing.

I was on oxygen for 19 months, so I really understand the fear of breathing-- or not breathing, to be more precise! The inhalers should help. They do cause anxiety as a side effect, and that may be contributing to your fear. Pred also causes anxiety. Between pred and inhalers, you may be getting a double dose!

I also learned that I can really freak myself out by focusing on my breath. If that happens, distract yourself as best as you can.

[elephant]

Welcome Tim, I too had lung involvement among other stuff. I had that lung nodule removed last year. I do have obstruction in my lungs. It is very scary especially when your dealing with lungs and breathing. I am Sangye nagger assistant, hoping you have a Wegeners specialist. I go to Cleveland Clinic in Ohio. I am really happy there and felt relieved that I say the Rheumatologist specialist. If you are getting worse , be persistant and let the doctors know.

[JanW]

Any time I used an inhaler as well as oral pred, Tim, I got very anxious. I was initially misdiagnosed with asthma for five years when it turned out that the I had WG all along. My condition was subglottic stenosis, which is scarring on the windpipe, so I always ask everyone here to make sure that they don't have that too (it's a rarer but classic presentation of WG, although it sounds like you have already had some very rare manifestions in your toes!). Most likely if you were intubated for your surgeries in the hospital, you would know if your windpipe is too small because they would have had trouble getting the tubes in. It is very scary not being able to breathe -- as my ENT says, breathing is definintely not overrated.

[wgrebel]

Sangye,

Thanks. I do not have a Wegs Specialist. However, the three rheumatologists at the clinic I go to informed me that I am not just getting one of them that I was getting all three. They have connections with a vasculitis clinic in Birmingham, AL. My docs have told me the diabetes will go away once I am off preds. I try to distract myself. I am calling my pulmonologist today and ask about oxygen. Did the oxygen help you sleep?

[wgrebel]

Thanks to each of you for your responses. I feel better knowing there are others out there. My breathing problems occur when I sleep, or try to sleep. I am asking about oxygen from my pulmonologist today. Apart from Sangye have any others been on Oxygen & if so did it help you sleep?

Thanks,

WGREBEL

[Sangye]

Oxygen doesn't help you sleep. If you're having breathing problems during sleep you might have sleep apnea. Your pulmy will know what to do.

Your docs would know if you need to be on it because they measure your oxygen saturation when they take your vital signs (it's the clip they put on your finger). Unless your oxygen saturation is very low, they don't prescribe oxygen. (O2 is considered a drug.) You definitely don't want to be on oxygen unless you have to. It's a huge pain, very uncomfortable and if your insurance doesn't cover it 100% it's also quite expensive. It's also very easy to become psychologically dependent on it even when you don't really need it. That happened to me right at the end. I'd had such difficulty breathing for so long, I was terrified not to have it.

I've never known of anyone going to 3 rheumy's at the same time. Many people have 2: a Wegs specialist rheumy and a local rheumy who takes direction from the Wegs doc.

My first rheumy (local) called Cleveland Clinic a couple times. Not to have them oversee my care-- as he should have done-- but to ask why I got clots, etc.... It's hard to convey how important it is for a Weggie to have a direct connection to a Wegs doc. Without it, local docs often just call them when they're stuck. A Weggie can get really messed up that way. We are often undertreated, overtreated and misdiagnosed.

[Jack]

I have Bronchiectasis - lots of coughing, but no great problem with breathing except when I'm particularly badly congested. The pulmonary specialists say that it is not connected with Wegener's, but there are several people on here suffering from it and all the facts fit the usual Wegener's pattern so the docs are probably wrong.

[JanW]

I'm thinking that Tim's rheumos can call University of Alabama at Birmingham -- which was one of the centers where the rtx testing was done so they have seen a fair amount of vasculitis patients, but it's not a major center in the sense that Mayo (MN), JHU or Cleveland Clinic are. A pulmo should be doing the oxygen sats at every visit -- and my rheumo did them as well (because of my stenosis). Perfectly normal is in the range of 100 percent (logical) and my doc says "incompatible with life" is 92 percent -- this would be a point at which they would have to start giving you extra oxygen. Are you on bactrim or something else for a lung infection? Are your lungs perfectly clear? I'm thinking with the ctx on board it's easy to pick up a lung infection or pneumonia and this would definitely affect your breathing. I know that some ctx patients are on bactrim for the lungs as a precauition because the kind of pneumonia that you become susceptible to if you are immunosuppressed can deteroriate so rapidly that it can kill you if you aren't already in the hospital. It's what a lot of AIDS patients died of before they discovered the drug cocktail and it's still one of the top threats to people who are immunosuppressed for whatever reason.

[Lightwarrior]

I take 1600/800 Bactrim Monday, Wednesday and Friday to prevent pcp and all the other odd infilitrators who like our lungs due to Wegs and the immunosuppresants.